Being a Triple-X parent

As a Triple-X parent life can be very demanding. This is because this rare syndrome is known too little by doctors, scientists and non-family members.

Our girls are pretty, nice, sweet girls, some are talkative, some are a bit introvert and dreamy. But they look “normal” (not obviously visible features like at Trisomy 21). So parents often get confronted with missing interest, patience and understanding by the “outer world”. They don’t find the help or support, treatments or understanding they need to strengthen their child or also themselves or describe what is diverse to siblings so they don’t feel overseen or disadvantaged. 

We want to give those parents who need to have somebody who understands without explanation, a shoulder. A huge hug. Appreciation. Respect they do deserve for fighting for their daughters. And ear to listen to, a “tribe” that offers advice or just a word to raise our great daughters together. We are not alone. But due to the fact that it is a rare syndrome and the Trixys are scattered all over the world, we as parents need to bridge language and distance gaps. But this is possible in the world today and it is time we make use of all technology and knowledge available. We will give you support by translation tools, databases etc., which are simple to use and monthly video conference with participants world wide. There is a lot we parents can do without being scientists or doctors.

While living with a Triple-X child one may get the diagnosis early pre-natal or later in life. Or some never find out. Still as knowing parents we all do our best to give our daughters the right support they sometimes need to catch up with their difficulties or disadvantages they have compared to average children. 

But it is hard to do exactly that when not many doctors (in the whole of Germany is not one specialized doctor to find, same in Brazil and an many other countries) know what Triple-x really means and is. Without a proper and accurate diagnosis treating the girls is a maneuver in the fog. And many parents are stressed out by societies that have a high demand on “functioning” children and people. They need to push their sensitive kids through a rigid school system that has no space for sensitive, kind kids with broad perception of daily life things. Who are overwhelmed by our high speed or loudness or requests without end to perform.

Problems, we are all tired of. And this is what this project is aiming at. To create a better awareness worldwide to improve the lives of thousands of families by using modern technology and means to build a solid and safe network to find professional information (studies and doctors) more easily and gain support of the real experts on this: the families who live with it.

There is so much we all could support each other with. Not necessarily with money (though some will be needed to pay for secure servers and spreading information to schools etc.) but with sharing all our first hand experience and communicate with each other wherever we are. 

Officials (at least here in Germany) and so don’t help us by now to find schools or every day support that give our girls enough respect and tolerance to let them make full use of their great potential to live self sufficient and happy lives. And to give parents the emotional and hands on support they need to sustain with the challenges faced every day. We need to strengthen mothers, fathers, siblings, partners by showing them respect, being seen and heard and valued and supported so they can continue to do their best for our “superwomen”. If we can achieve a better base to start for every day a lot is won. Much more than science can explain. 

It is very valuable and important to know and read the research that has been done by a few interested scientists and also to sometimes join and participate in new studies so more knowledge and understanding can be acquired. 

It is one foot to stand tall for the families. But to understand real life and get a better overview what the whole cloud of families finds in similarities and patterns and communicate about findings of what helps for example to do better at school or deal with physical symptoms is essential for a better everyday life. And that is something that is often missing in clinical studies.

This is the gap this project wants to bridge. We found it very helpful to hear stories and findings of other families from all over the world. To learn from each other, to know and let the Triple-X girls and women know they are not alone or left alone and that we all do care and have a positive perspective for the future.

And to give respect and acceptance to parents and siblings who do their best to make the life of their “Trixies” better every day. We all know and understand what life with Triple-X means. And we are all standing tall for each other.